I don’t know any celebrities but if I had the opportunity I’d hang out with Chris Bath. Chris facilitated the plenary discussion at the CarersNSW Conference where I was invited as a carer representative. A natural gem, who better than Chris to aid the panelists deliver their stories and ideas to an audience of professionals, service providers and the extended care community.
I was well aware prior to my arrival at the venue that I had over-prepared. I acknowledge my approach could be seen as clinical as I had typed my answers to the suggested questions, helping to focus myself on the issues and prevent an overflow of enthusiasm! I had so much to say, too little time with a genuine passion as I’m presenting and discussing my life. A carers life.
The aims of the panel were given to us in advance:
- To provide an insight into real life carer experiences
- How can caring be revolutionized?
The suggested questions were:
1. If I was running the system – what would I change?
2. My single biggest challenge as a carer.
3. What could Government, services and the Community to do differently?
4. What works well and what can we learn from that?
5. What do I want people to know about carers?
I have reproduced my answers here. Do you agree with me?
If I was running system – what would I change?
My Idea – Formation of a National Register
i) The Situation: Carers and enduring patients have to deal with many different care agencies e.g. Centrelink, Medicare, Enable, Continence Aids Payment Scheme (CAPS), Community Nursing , Disability Parking Scheme, Taxi voucher scheme, doctors and the dispensing chemist, specialist consultants with annual X Rays, Kidney scans etc.
ii) Problem: Most, if not all, of these agencies use their own unique reference numbers and data base. This causes a significant effort in having to file and track all these different numbers and details, etc. This is a huge and repetitive administrative load on top of the caring role !
iii) Proposed Solution: Develop a single National patient register with a single patient identifier/ number for all enduring patients……..maybe linked to one physical card. If Emily as a vulnerable person lost or had her purse stolen her valuable cards, taxi voucher booklet, companion card etc could be cancelled and replaced quickly quoting one number with agreed verbal security questions. The system needs to be Online so easily managed from an ipad or computer and offering out of hours facilities. In a streamlined paperless environment Emily has the potential to manage herself !
My single biggest challenge as a carer
My Idea – More efficient re-supply, re-order, re-view
i) Situation: Currently I oversee the frequently required supplies of many different essential care items such as catheters, drugs, equipment repairs etc etc, and the routine appointments with different specialist care professionals
ii) Problem: This is very time-consuming as many of these items cannot be re-supplied without a prescription i.e.renewing a jel seat requires a script from an OT. Gaining appointments with most specialists i.e.SCI consultant, urologist, gynecologist, with bone density scans and x-rays requires a referral from a GP. Currently all these systems seem to be appropriately designed around a typical patient that has a one-off or infrequent condition. Unfortunately, enduring patients do not fit this system design very well as they or their carers need to constantly gain new prescriptions and referrals for the same enduring condition and repeat drugs and annual specialists.
iii) Proposed Solution: To give enduring patients enduring prescriptions and enduring referrals to remove the high cost and inefficiency of having to constantly visit the general practitioner to replace temporary ones. This solution aids the patient and carer as one.
What could Government, services and the Community to do differently?
My Idea – Car Parking, two tier system with red permits for wheelchair users
i) Situation: Currently there is only one type of disabled bay for all different types of disabled persons
ii) Problem: The challenge is that many of these parking bays are too small to allow a wheelchair to be unloaded safely alongside the car. I either leave Emily in the car or we park awkwardly sometimes a fair distance from our objective ensuring a long exhausting push.
iii) Proposed Solution: Develop the system so two different types of car parking bays exist – the current Blue and a new category of Red disabled parks for wheelchair users. These Red spaces would be 1.5 the normal bay width and allow a wheelchair to be safely positioned alongside a car for loading and unloading the user. Another solution that helps carers perform their role with ease.
What could Government, services and the Community to do differently?
My Idea – Youth Accommodation
i) Situation: Currently there are few accommodation options for many young people with disabilities.
ii) Problem: If a young wheelchair user needs accommodation invariably all that is available are aged care homes. Whilst age care homes have the nursing and healthcare support they do not provide a suitable environment for younger people to live a mentally blossoming, stimulating life. It is inevitable that parents age and become less fit or able to care.
iii) Proposed Solution: Homes that are dedicated to younger people with wheelchair access, situated near transport and work opportunities allowing differently-abled people to live independently and contribute to society.
What works well and what can we learn from that ?
The Governments supply of essential equipment through Enable and nursing support through care packages has allowed Emily to live at home, return to University and look forward to a productive future whilst remaining in her family unit.
The NDIS commences in our area in July 2016 so we await precise individualized details.
What do I want people to know about carers?
Caring is challenging; I have a mental calendar running daily, weekly, monthly for all the repeats, renewals and appointments. Caring is physically hard work and stressful, there’s multiple practical tasks interwoven with the routine activities of living assistance, with temperature control a constant issue that I address; day and night.
Using Maslow’s hierarchy of needs as a framework to demonstrate my point; carers are often stuck in the bottom levels. Most of our time is spent ensuring the physiological needs (food,water, shelter,clothing,sleep) with safety and security demands (health, employment, property, family, stability) we rarely have time to rise to the higher levels of socialization, individualism or creativity.
Currently I spend a huge amount of my caring time inefficiently being the bridge between the many different and disparate elements of the health systems. If the systems were altered to allow my time to be more efficiently applied then I would have the ability to return to paid work and meet the demands of my caring role.
My fellow panelists had equally brilliant ideals which I fully support. Succinctly we all agreed that there is a need for more education in schools so that children learn tolerance and inclusion of the differently-abled and their caregivers at an early age. We agreed that raising awareness in regards to carers and their role can never be underestimated. We all agreed that only with resources can a family unit support people with disabilities in the community. Our definition of resources included appropriate school and child care facilities, equipment, financial support, nursing care and respite opportunities. We were singularly agreed that caring is shared and includes siblings, mothers, fathers, sons and daughters – it’s a family thing!
If I had more time I could then hang out with Chris Bath and chat about The Eels!!